LEFT TO DIE QUIETLY

AAKASH HASSAN

Publish Date: Mar 12 2018 1:27AM

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Updated Date: Mar 12 2018 1:27AM

Two villages in South Kashmir are being devastated by hepatitis C, and the government is doing little to help them

In the winter of 2012, Dr Mohammad Sultan Khuroo received a patient at his clinic in Qamarwari, Srinagar. As he was being examined, the man uttered something that left the renowned gastroenterologist stunned: “Everyone in my village is ill like me.”

For what this man had was not any common affliction. He had hepatitis C. If his fellow villagers were indeed infected as well, it would constitute a health emergency.

Khuroo, former director of the Sher-i-Kashmir Institute of Medical Sciences, Srinagar, is in his mid-70s, but he was so disturbed by the news that a few days later, he drove 92 km to the man’s village, Tagya Magam in Anantnag district. He spoke with the people and collected blood samples from the sick residents. He also visited the neighbouring Sonabrarie village after hearing of similar cases there. As he had feared, most of the samples tested for hepatitis C.

Hepatitis C is a viral infection that causes inflammation of liver, leading to severe liver damage and even death.

Khuroo immediately met the state’s health secretary and informed him of the grave situation. The health department rushed a team of doctors, along with Khuroo’s doctors, to the villages. “We jointly undertook an unprecedented exhaustive house-to-house survey, conducted routine and advanced laboratory tests and used epidemiological tools to define the exact mode of spread of this infection,” Khuroo wrote later.

The tests were paid for by a medical trust run by Khuroo’s family. “Our findings on the situation in these two villages were unbelievable at the first look,” Khuroo wrote in an article published in Greater Kashmir in July 2013. “We were facing a colossal ongoing massive epidemic of hepatitis C, the implications of which were far reaching than we had ever thought of. Hepatitis C virus...caused the epidemic. One third of the population is chronically infected with the virus. I submitted a hundred page comprehensive report to health department in April 2013 about the findings and suggested that mass screening should be started and all the people be treated. This was estimated in the report that it would cost rupees fifty crore.”

By then, this outbreak of hepatitis C villages had become frontpage news.

Ground zero

The twin villages of Taqya Magam and Sonabrarie, home to nearly 11,000 people as per the census of 2011, are tucked away in thinly wooded hillocks of Kokernag area, the southern end of the Kashmir valley. In these off-track hamlets, most people work as labourers in nearby towns and reside in mud houses.

Former sarpanch Mohammad Abdullah Bhat, 70, remembers the doctors visiting Taqya Magam. “We were shocked to learn about the prevalence of the disease,” he recalled, sitting at the local chemist’s.

In his village, Bhat said, people would often die of jaundice and they couldn’t even think of relating it to anything else.

Counting on his finger tips, he said: “Twenty, yes twenty people died from liver disease in the few years before the disease was identified.”

Nazir Ahmad, a government school teacher, who has come to get medicine for runny nose and drowsiness, joins in the conversation. “They let us die for long,” he said. “There were people from our village who had been found infected with hepatitis C as far back as the late 90s but the doctors concealed it from us.” Today, he claimed, in “ninety per cent of the households you will find cases of HCV.”

Habibullah Mir, in his early 70s, still has rough figures of the infected people from when the doctors visited after outbreak. He remembers most of those doctors, too. “Several teams of doctors came and they collected samples of around 350 people and then started treating 250 people,” he said. He and his wife were among the infected.

In February 2014, the state government sanctioned Rs 7.5 crore for screening and treating hepatitis C patients. Has that benefited these villagers?

Broken lives

Perched by a sloping path thickly shaded by walnut trees is the double story house of Ghulam Mohammad. “When the news spread, I went to Anantnag and screened my wife, my parents and myself at a private clinic, otherwise we would have to wait for the next time the medical team arrived for collecting samples,” the long-bearded mason said. “It cost me ten thousand rupees for the screening. We were all infected.”

They were listed among the affected, entitling them to free weekly medicine from Anantnag District Hospital, around 30 km away. “The disease affected me mentally and I became weak physically, thus, I was out of work for most of the time,” he said. He and his family completed the mandated six months of treatment. “Three years have passed and we do not know if we have been cured or not.” He has not gone for another screening. “It would cost me ten thousand rupees. I cannot afford that.”

Mohammad has three daughters and a son, aged between five and 16. “I don’t know if they are infected as well, we have not screened them,” he said despairingly.

According to data provided by District Hospital Anantnag, 1,115 residents of Tagya Magam and Sonabarie were registered with as infected with hepatitis C in 2017 after the screening of 2,468 people. By this measure, 45% of the people in these twin villages are infected. Yet, only about 20% of their combined population has been screened so far.

The data also shows that of the total 1,190 patients registered with the hospital, at least 207 have finished treatment while 548 people are still getting it. Of the latter, 229 need tertiary care.

In 2017, a study conducted by the Government Medical College, Srinagar, found that the deadly disease has spread to four South Kashmir districts of Anantnag, Pulwama, Kulgam and Shopian. The study, according to a newspaper report, called the situation alarming. It found 3.8% of Anantnag district’s population infected with hepatitis C followed, 1.3% of Shopian’s, 1.2% of Kulgam’s and 0.7% of Pulwama’s. Its authors claim it was the largest community-based study of hepatitis C ever in Kashmir, carried out over 18 months. In all, 6,800 people were screened.

The disease has devastated many families in Taqya Magam. Firdoosa, in her early 40s, lost her husband two years ago, barely a few months after the family tested positive for HCV.

She has three boys, aged 11 to 16. “Initially, I and my husband were tested by the medical team that visited the village for free. When the tests revealed we are infected, my husband, who was a labourer, managed money somehow and got our three children tested at a private lab in Anantnag,” she said. They too turned out to be infected.

“My husband fell ill in November 2015,” Firdoosa continued. “He had turned week and was vomiting. Before we could take him to hospital he died. Now my elder son has left school and he has started working like his father.”

Her other two children go to school but she is not sure how long she can afford to pay for their education

Naseema, also in her early 40s, betrays a faint smile when asked about her family. “We are all well,” she said, sarcastically. She paused briefly, then said: “Actually we didn’t go for screening,” she said. Her husband works as a labourer in Anantnag town and they have five children. “My husband earns 350 rupees a day. Of that, a hundred goes for his travel. Tell me, how will I have money to get tested? If we have to die, we will, Allah knows everything.”

Several other families do not want to get tested either. They are afraid that testing positive would “only increase the trouble.” For one, there’s social stigma attached to the disease. “When we go out of the village, people keep a distance from us. Even our relatives in other places wish not to meet us,” said a recently graduated young man who asked not to be named. “I am myself infected and my parents are as well,” he said. “My friend was in love with a girl from a nearby village and they were engaged. But after the outbreak the girl broke it off. Not her parents, she herself was unwilling.”

Riyaz Ahmad, the chemist, complained that for even minor ailments such as toothache, local doctors sometimes ask the villagers to go to Srinagar for treatment and that hardly any women gives birth at the local hospital. “They refer patients who have to undergo any surgical processes, mostly to Srinagar,” he said.

The disease has also forced many children to leave school, said Nazir Ahmad Khanday, who teaches at the village’s government school.

Finding cause

Khuroo said they found “malpractices by local chemists” to be the immediate cause for the outbreak of hepatitis C. “At that time there were three chemists who were catering to the entire population and they were practising without proper education,” he said. “Observing the chemists and talking to them, I found that they were injecting almost every patient with the same needle,” he explained. “There could be other causes: a barber using the same blade or the people going for leech therapies.”

Riyaz agreed: “Yes, we were using those old syringes made of glass and we used the same one on all patients.”

Kashmir’s director of health services was not available for comment. Dr Rehana Kousar, the epidemiologist tasked with looking after the testing and treatment of hepatitis C in the valley, said she wasn’t worried about the situation. “We have been visiting to that place regularly,” she said by way of an explanation.

Rehana has co-authored, along with the health services director and two other doctors, a study on HCV patients in the twin villages titled Epidemic of Hepatitis C in a Remote Village of Kashmir, India. “An investigation of the outbreak was conducted by a survey of the household contacts of the seven hepatitis cases in the first phase of investigation followed by screening of the entire 2,600 population of the village in the second phase,” reads the study published in February 2016, adding that 38.37% of the people tested were found infected.

This study also lists the sharing of syringes and needles as the primary cause of the outbreak. It further notes that no paramedic and chemist in the areas is “qualified” and “they reported providing 10-15 injections per day, usually antibiotics, analgesics, vitamins and glucose infusions.”

“In each chemist shop, there is a small room adjacent to the main pharmacy where IV infusions and injections are given,” the study adds. “In this way, the chemist loads injections in one room and provides services in other room. One interesting finding was the use of large volume diluents for injection purpose. The chemist’s use a single bottle of diluents.”

Doctors at District Hospital Anantnag claim the gravity of the situation is being underplayed. “This is the tip of the iceberg: only thirty per cent is visible,” said a senior doctor. If a mass screening is done, he added, the figures it would throw up would be alarming. “Successive governments have put a curtain over it. But they cannot contain it,” he said.

Indeed, the infection has already spread to other areas. Sagam is around 12 km from the twin villages. As per the health department, 20% of its population is has hepatitis C. Aadil Ahmad, a resident of the village, claimed seven people have died from the disease over the last few years in Sagam.

Hepatitis C patients are also emerging from other parts of Kashmir. “Now I see patients from different parts of the valley infected by the same disease and the genotype is the same, which suggests that the sources is one,” Khuroo said.

Around 185 million people worldwide are infected with hepatitis C, according to the World Health Organisation, and nearly 3,50,000 die from it each year. The disease is, in fact, considered more dangerous than HIV now.